It Shouldn't Be This Way: The Failure of Long-Term Care

Robert L. Kane, MD, and Joan C. West. It Shouldn't Be This Way: The Failure of Long-Term Care. (Vanderbilt University Press, Nashville, TN: 2005. 180 pages.)

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If anyone could assure his mother a good experience in navigating our nation's long-term care system, you would think it would be a nationally known gerontologist who specializes in studying the delivery of long-term care services.

But despite his considerable expertise, Robert L. Kane, MD, who holds an endowed chair in long-term care and aging at the Minnesota School of Public Health, had a very tough time finding suitable care for his mother, Ruth Kane, after she suffered a debilitating stroke in 1999.

Over the course of three years, Kane and his sister Joan C. West, an education professor, moved their mother from a hospital to rehabilitation to assisted living and finally to a nursing home. In the process, they learned first-hand what they already knew intellectually: that traversing our long-term care system is a terrible ordeal and that the system is, in their words, a "national disgrace."

Kane and West recount their mother's story in this book, imparting the lessons they learned from each phase of the experience in hopes that it will help prepare other adult children and family members for what they are likely to face. They discovered, for example, that hospital discharge planners are overburdened and often regard "the first train leaving the station as the best one regardless of its destination." They also found that the term 'assisted living' "has come to mean anything a vendor wants it to."

Kane and West provide practical suggestions and cautions on how to approach problems encountered, and each chapter ends with a set of formal lessons that are derived from each element of their experience.

But Kane and West stress that there is only so much preparation that families can do in finding their way through an essentially unworkable system. They therefore intend It Shouldn't Be This Way to also serve as "a call to action" to make long-term care more humane and affordable for the frail elderly. Of paramount importance, they argue, is both better pay for those who provide direct care to the elderly and a change so that such jobs are looked upon as a noble calling. They also see much promise in the increasing use of nurse practitioners, rather than doctors, in long-term care settings. Finally, they say it's time for a nationwide program that will deliver long-term care to all, either using public monies alone or a combination of public and private funds.

Read an article in the New York Times about the struggles of Dr. Kane and his wife, Rosalie, to care for their aging parents. (Article may no longer be available free of charge.)